Patient Stories
I never thought this would happen to our son
On June 16, 2019, our 4-year-old son, Evan, fell off a jungle gym at daycare. At first, his daycare provider thought he was fine. He got right up and seemed to recover. She called me and we agreed to watch him to see if there were any changes. A couple hours later, Evan started throwing ... Read More about I never thought this would happen to our son
Patient Stories
Accessing hemophilia care: A tale of two countries
When Miguel and Marco Antonio were born in the Philippines, they had a 50 percent chance of having hemophilia, as two of their uncles had the condition. “We were just crossing our fingers that they’d fall in the other 50 percent,” says Jojo, their father. But when Miguel was taking his first steps as ... Read More about Accessing hemophilia care: A tale of two countries
Research
Long-term hemophilia treatment could lie in patients’ own cells
Children (and adults) with hemophilia are slow to form blood clots, so are at constant risk for uncontrolled bleeding. Even when the skin isn’t broken, a fall or a simple toe stub can become a serious medical issue: internal bleeding cause permanent damage to muscles and joints. While regularly replacing the missing or malfunctioning clotting ... Read More about Long-term hemophilia treatment could lie in patients’ own cells
Research
Child access prevention laws spare gun deaths in children
Child access prevention (CAP) laws are on the books in half of U.S. states. They are meant to protect children from accessing firearms by holding a parent or guardian responsible for the actions or potential actions a child takes with a firearm. New research from Boston Children’s Hospital finds that U.S. states with CAP laws ... Read More about Child access prevention laws spare gun deaths in children
Research
Gliomatosis cerebri: ‘As long as you keep going, you still have hope’
Anna Arabia, the only child of Kathy and Joe Arabia of North Adams, Massachusetts, was 13 when she was diagnosed with gliomatosis cerebri, a rare, rapidly-growing brain cancer. Unlike other tumors, gliomatosis cerebri does not form into lumps; instead it is threadlike, invading multiple lobes of the brain, making it impossible to remove surgically. Anna ... Read More about Gliomatosis cerebri: ‘As long as you keep going, you still have hope’
Patient Stories
Pearson syndrome and the story of William’s cells
William will often ask to hear the “story about his cells.” His mom and dad, Elizabeth and Jeff Reynolds, are always honest. Yet, it is difficult for the 4-year-old to understand words like mitochondrial disease or myelodysplastic syndrome. He also can’t comprehend his parents’ pursuit of a novel treatment for Pearson syndrome, which led them ... Read More about Pearson syndrome and the story of William’s cells
Patient Stories
Avulsion fracture taps the brakes on a runner’s races
By the time Will Benoit and his parents met Dr. Kristin Whitney, they all had a bad feeling about his left hip. “When she told us Will had a pelvic avulsion fracture, we knew his running season was over,” says his father, Russ. The question was, when would Will run again? From third grade on, ... Read More about Avulsion fracture taps the brakes on a runner’s races
Health and Parenting
When your child has CHD: Advice from parents for parents
“When you enter the world of congenital heart conditions (CHDs), everything can feel new, scary, complicated, and fast paced,” says Claire Poole, mother of Ava, a 17-year-old heart patient at Boston Children’s Hospital. This Heart Month, we asked Claire to kick off a post on our Heart Center Facebook page inviting parents to share their ... Read More about When your child has CHD: Advice from parents for parents
Patient Stories
A trip to Boston for FMT helps Isaac regain his health
For Isaac Flaming, a course of antibiotics prescribed to treat a simple ear infection led to Clostridium difficile (C. diff), a serious intestinal infection that causes diarrhea, bloody stools, weight loss, and fever. After four months of dealing with an array of debilitating symptoms, the 7-year-old traveled from his home in Oklahoma to Boston Children’s Hospital ... Read More about A trip to Boston for FMT helps Isaac regain his health
Research
Following blood stem cells in the body could yield better, safer treatments
Blood stem cells make all the different kinds of blood and immune cells in our body. Scientists have long been trying to make these cells in the lab and use them to make different blood cell types on demand. Mastering these feats could help make bone marrow transplants more efficient and less toxic, and could ... Read More about Following blood stem cells in the body could yield better, safer treatments